Right - catchup...

Firstly, no, the blasted BPPV hasn't gone, although it is a little better than it was yesterday and the day before, which is encouraging. The meds (prochlorperazine maleate 3mg buccal tablets) do seem to help a little, and of course I'm learning to cope (although today everything's developed an annoying tendency to tilt to the right: the screen looks as though it's 2 - 3 degrees off true). Walking is a trial, and I still need to have something nearby to grab if my balance goes, but otherwise I can manage. Well, I made dinner yesterday and have managed to put a wash going this morning, so I'm not exactly helpless. And at least I've stopped throwing up. I wouldn't wish this on anyone though, it's horrible.

As I discovered yesterday, sitting here at the computer is actually the most useful thing I can do at the moment (well, that or lying in bed, but damned if I'm going to waste time doing that! Not to mention it kills my back...) even if I'm a bit slower than normal. My lack of balance doesn't matter too much when I'm sitting, and focusing on the screen stops everything moving quite so dizzyingly. As long as I take breaks every now and then I'm OK.

We're now all organised for the London trip - and yes, it is necessary. We spoke to Dr Lowry on Monday after Kai's blood tranfusion, and the last biopsy shows no change: Kai's bone marrow still isn't working, and there should have been some improvement by now. When we've seen the specialists we'll have more of an idea which treatment to try next (and of course there is always the remote chance that the ATG could still kick in, even though it's been nearly five months now). That's in a couple of weeks' time. Other than that, Kai is now having washed platelets, and for Monday's transfusion they tried them without the half dose of hydrocortisone - and he was fine. The less of that stuff he has to have the better. He and Ken went over to the Callington Road nature reserve (a little further on from Tesco) on Wednesday and he thoroughly enjoyed the walk, and even caught the sun a little (yes, we actually had a sunny day!), so is looking better at the moment.

Kai and I watched Erik the Viking and thoroughly enjoyed it. I'd forgotten quite how thought-provoking the film is. We watched the original theatrical release: the director's son's version has had a good 20 minutes removed, and even though the blurb recommended it as a superior version, we thought we'd watch the original first. (I'll try to watch the other version sometimes soon). And last night we all settled down with Thor: the Dark World, which I bought on Monday to watch for my birthday...

Very enjoyable (apart from that hugely irritating Darcy character). And the film makes an effort to address something that really bugged me in the first film: the story is about Norse myth, so why the hell is Heimdall black and one of Thor's warriors Asian? (Yes, I am vaguely aware of that stupid 'law' that seems to dictate that all earthly races must be represented in big name films these days. Tuvok made me spit.) By making Vanaheim the home of Hogun's people (hence Asian), the makers have at least attempted to give a logical reason for his presence. In context, anyway. Presumably one of the other Nine Realms is the home of Heimdall's people. I can live with that. In context.

The acting was generally good (especially Tom Hiddlestone's Loki. How anyone can look so vulnerable and evil at the same time is a marvel...) and the cgi gorgeous. Now looking forward to the next one.

I've read More Than Meets The Eye 3 and 4 (little by little when the words stopped moving around the page) over the last few days, and I really have to quote a bit. The backstory is that the war between the Autobots and the Decepticons is over, and while most Cybertronians are working on rebuilding their devastated world, Rodimus has assembled a group of transformers (misfits, oddballs and nutcases, essentially!) to travel on the Lost Light to find the ancient Knights of Cybertron. The graphic novels tell the stories of their adventures along the way, and are great fun (as well as being heart-wrenchingly sad in places. The characterisation in these books is the best I've ever seen in the Transformers multiverse and the writing truly excellent.) Ultra Magnus is a member of the crew. I like Ultra Magnus, despite his being absolutely 'by the book' (the book in the MTMTE case being the multi-thousand page Autobot Code)...

Ultra Magnus: MUTINY!
Everywhere I look I see rules being stretched and laws being broken and protocols being dragged outside and kicked to death.
I've made a list: One, Skids keeps using the maintenance droids for target practise; Two, Waverider and Sureshot insist on playing hand grenade tag outside my office; Three, the warning signs that Dipstick put up in the engine rooms are riddled with misplaced apostrophes; Four, Sprocket keeps touching his
Rodimus: MAGNUS! Can we just... can we just pause for a moment? These rule breakers - and I use the term in an exceptionally loose sense - what've you done with them all?
Ultra Magnus: I've... imposed appropriate disciplinary procedures.
Rodimus: Is that Magnus-speak for 'I've had them all killed'?

I love that 'misplaced apostrophes'!

A little further on (whispered conversation):

Rodimus: C'mon, if anyone can cheer him [Ultra Magnus] up, you can.
Swerve: You say 'cheer him up' like it's something other than a centuries-long undertaking destined to end in madness and suicide...

I love these books. I really hope they eventually become a TV series.

That's about me for now - I need have something to eat, stick the tablets under my upper lip and go lie on sofa with Tf:Animated for half an hour I think...

Labels: AAARRGGHH, films, medical matters, MTMTE, Thor, Transformers

Ken here. Joules is currently stuck in bed with BPPV (google it), which came on suddenly yesterday mid-day: can't even sit up without the room spinning, and can't eat for nausea. Has meds from dr. to minimise symptoms, but don't know when it will go away.

She says many thanks for cards and wishes, and will celebrate b-day properly when better. Hopefully just a few days.

Lutra, please let Clicha on tumblr know and ask her to re-blog Starmun's apologies to r.p. partners.

Cheers

And first thing this morning there were six large clumps of frogspawn in Roeg's Pool.

They were at it again ten minutes ago. I nipped out to take a look and there are another two clumps. [sigh] We have four pools in the garden - Kai's woodland pool is twice the size of Roeg's and would be much more suitable, but for some reason it's always Roeg's...

Ah well. The garden's big enough to support quite a large frog population.

Labels: frogs

Later edit: So I'm about to close down after clearing up a few bits and pieces and I suddenly realise there is an absolute cacophony of croaks and brrrrrrruPHS coming from the pools in the garden. I mean, it's been... January: rain, wind, more rain, foxes, wind, rain, quiet... February: wind, rain, more rain, foxes, rain, rain SUDDENLY FROG-BONKING SEASON!!

We'll be OK as long as there isn't a sudden cold snap.

We like frogs. They eat bugs and are very pretty.

GoodTwin and Sue came to visit, and I had an early birthday...

*bg* Of course I have to open my presents, so they can see my reactions. Which were absolutely delighted: I have a Transformers mug with the Decepticon brand on one hemisphere and the Autobot one on the other; MTMTE volumes 3, 4 and 5; and Erik the Viking!! I love this film! And this has the director's son's cut as well as the theatrical one (there's a booklet in the case that explains the difference which I will check out tomorrow).

GoodTwin drove us out to Almondsbury garden centre, where we had lunch and I picked up three small irises (blue and purple, very pretty), four different dianthuses and a couple of winter flowering heathers, as well as some indoor potting compost and a handful of packets of seeds - sweetcorn, cucumber and tomato.

Sue had brought her Agatha Christie and Trivial Pursuit games with her... I was a complete fail at both, though in my defence the first was heavily reliant on names and dates, neither of which I'm very good with, and in the second one I got some very tricky questions. Sue won both games - her questions in the second game were mostly really easy! They were great fun though, and highly amusing in places. Especially when we were trying to remember Robert Carlisle's name...

Thank you both - I had a fantastic day! Definitely tired now though - hoping for an earlyish bed.

Labels: birthdays, friends

Later edit: Please spread the word.

So this morning I get an email from amazon UK telling me my £2 mp3 credit is due to expire at the end of Feb... To be honest, I didn't know I had any, although I have bought a few mp3 tracks this last year. Anyway, rather than let it go to waste I treated myself to the Broken Iris mp3 album The Eyes of Tomorrow. I raved about the track Where Butterflies Never Die a while back, and it still gets added to every playlist I make.

Listened to it over the last hour.

wow.

I mean, WOW.

It's beautiful. 15 tracks and there isn't one on there that I don't love. That's never happened before. There are shades of Pink Floyd, Dream Theater, Muse, but none of them overpowering. Big, rich, complex sounds and wonderful lyrics. Why aren't they better known!?

It may well be the best £5.49 I've ever spent. Their website's a mess though. I'm itching to get in there and sort it out for them.

Lin sent me this -

Certainly the best I've ever seen. Though her comment made me laugh too...

I am of an age to remember using the Wang computer, and oh my the Chinglish involved in that! "To adjust heaties and coolies, please control yourself at no bigger than eighty degrees Fahrenheit" has engraved itself onto my cerebellum for ease of recall.

*snerk* 'Heaties and coolies'. I love that. (We won't mention the Wang computer...)

Labels: Broken Iris, funnies, musekicks

Nice quick appt today: Kai's RBC was 74 and his platelets 17 (he has transfusions when they hit 70 and 10 (or below) respectively).

Did Tesco shop when we got home, then we both flopped and watched Avatar. Been a while since we've seen it and we thoroughly enjoyed it. Bit annoyed to find out the sequel won't be out til 2016 though (and films 3 and 4 in 2017 and 2018).

I'm now so tired everything's gone fuzzy. Having a lie in tomorrow.

A shelf of Strarscreams. This isn't quite all of them: Prime is with the rest of his compatriots on the shelf above, while Cybertron, Machine Wars, Armada and Hearts of Steel are still down on my desk (and I have the new Armada 'scream on order from BBTS end March). This pic is clickable to a much larger one: see how many you recognise!

Another catchup...

Saturday Ken sank five big rocks to make new steps from the patio up to the meadow. It's a tiny slope but with the atrocious weather it's been muddy and treacherous: it's now nice and safe. I use it at least three times a day to fill the bird feeders.

Sunday we repotted Rosa, fed Feather, and watched Young Einstein. It's even funnier than I remembered (I missed the time travel gags before) - thoroughly enjoyed it.

Monday appointment was long. Kai needed platelets, and they decided to go with washed ones - except there weren't any ready and he really couldn't face waiting five hours in the day unit while they were prepared. So we got a taxi back (wince) and he slept on the sofa until it was time to go back. On the plus side, they've prescribed him a half dose of hydrocortisone when he has washed platelets (and put in an order for them to be ready when we go next Monday) and it all went very well (apparently he's been feeling strange with the normal platelets, but didn't know whether it was real or fear of the reaction, so didn't mention it). So it'll be washed platelets from now on. It's a compromise, but it works.

Also heard that we will get the funding for the London consultation, so I can go ahead and order the train tickets. Raileasy - oops, Trainline! - looks to be the best option, should be around £60 for both of us, return tickets.

Today I've cleaned the kitchen (and we have the husband of one of my APAG friends coming round to fix the drip tonight: he's a builder, did their kitchen himself I think): cleared my client stuff, answered emails, and tidied my Starscream shelf. I have actually cleared everything I had left to do, until more comes in, so I can happily carry on watching Transformers: Animated with a clear conscience. (Season three is out in June so I thought I'd watch the rest in advance.) Which reminds me - my latest find:

Leader class Animated Megatron. On ebay. Complete. And he talks (well, he would if I could find where to put the batteries!) and his mouth moves. I am dead chuffed! He's over £60 new: I got him for £16 + p&p.

And to end - the lilies are amazing. As they die they go translucent, like fine embroidered linen. Wonderful flowers.

Labels: busyness, medical matters, zzzzzzzoooooooooooooooooommmmm

Behind again. Thursday was a quick appt, and when we got home I did a double shop to save having to do too much this weekend.

Yesterday my new jacket arrived from Oxendales (and about time too, my old - 25 year old - fleece is now so threadbare the wind goes straight through it, and it was never rainproof...), so I borrowed Ken's bus season ticket, ventured out in the atrocious rain and wind, and went in search of crickets. Discovered a new place - The Reptile Emporium - that I can get to more easily than Almondsbury Garden Centre (bus into Westbury-on-Trym then another bus two stops up a very steep hill), and they also keep frozen rats, so at a pinch I have an alternative supplier for food for the non-four-legged beastlies. Nice place and very nice people, unlike the boss at the Reptile Zone. Used the trip to pick up buckwheat flour, Vitam-R and organic gravy powder at Phil's and Wild Oats as well. (And the jacket is brilliant - warm, dry and comfortable. Very pleased with it. Now let's see how long I can make it last!)

After dinner we watched Second Sight Detective Agency, which is supposed to be for my birthday but we all needed a laugh. It's funny - not brilliant, but the idea is fun, and the execution nicely done. I also recently found the DVD of Young Einstein, a film that never fails to make me laugh, which is also supposed to be for my birthday and which we will probably watch tonight. (I'm actually doing quite well with my goal of replacing all our old videos with DVDs.)

In a little while, when Ken reaches a natural break, we're going to repot Rosa...

Labels: busyness, films, shopping

On the landing...

... in the lounge...

... on my desk. Gorgeous.

For non-UK readers who don't watch international news, THIS is what the country is currently enduring. Current thinking is it's going to last for months more: more storms are on the way and there is simply nowhere for the water to go. The aquifers are full to bursting and the ground is completely saturated.

Having an early night - I feel dreadful, haven't been able to eat anything today, can't get warm, and everything hurts. Probably just stress.

Labels: flowers, medical matters, weather

9 am appointment - and the doctor decided Kai needed blood as well as platelets (usually - if I can say such a thing - it would be Thursday before he needed any). So not exactly the happiest start to the day. At least we didn't have to wait too long for the blood, but it was still a much longer day than we'd anticipated. And they gave him hydrocortisone before the platelets too, though we're expecting a decision about the washed platelets later in the week.

Arrived back to a HUGE bouquet of flowers from GoodTwin and Adrian, as a cheer-up present. They are absolutely beautiful...

Tomorrow I shall look out some vases and split them up. We can have flowers all over the house, which will be lovely. The fragrance is gorgeous too. Thank you.

Labels: flowers, medical matters

I've spent so much of my life feeling helpless, but this...

Thursday I had to sign a form declaring that I was Kai's mum/carer/guardian for the application for funding for the London appointment in March. The nurse who gave it to me then had to nip off for a moment to deal with someone else, so I flipped the page and read the consultant's report.

It said the treatment isn't working.

I daren't cry. If I start, I won't be able to stop.

Ignore me. I'll be strong again tomorrow.

Soooo...

Friday was mostly shopping and various online stuff in the evening.

Yesterday was the Sunday shop, early, general cleaning, and Taken 2, which was fun but not quite as compelling as the first one.

Today has been more cleaning, and I've got some seeds started - early peas and spinach outside, tomatoes, cucumbers, cauliflowers and sweet peppers on the kitchen windowshelf. Satisfying but tiring weekend.

Labels: busyness, domesticity, gardening

Another very quick checking in. Kai had a reaction to today's platelets: went through the same procedure as before and is OK, but it made the visit very long. And they're talking about giving him hydrocortisone before every platelet transfusion, which means once a week. I've expressed my misgivings, and the doctor was going to speak to the consultant (which is s good thing, as she wasn't at all keen on Kai having regular steroids at his age): we may be moving to 'washed' platelets...

After dinner Ken and I watched the last hour and twenty mins of Farishtay. All I missed at the end was a fairly obvious finale and explosions on a Michael Bay scale (so I didn't miss much then). Overall it was lots of fun and Kai's made me a great copy of my favourite song - Bhai Behan Ka Pyaar (this isn't a clip from the film, unfortunately, but it's a wonderful high quality version of the song, so play it while looking at other things...)

Labels: films, medical matters

Checking in quickly.

Today's appointment was quick - blood test, review and line care - and we were home by 10.30. It does look, however, that the London appointment is going to be a thing in March. More on that later.

This evening I watched the first hour of Farishtay (a Yule present), which I saw part of on TV back when we were living in the Totterdown flat: I set the tape going to record it but the film itself is about three and a half hours long and the tape ran out - so I've never known the ending. Oh wow, the music!! *g* It's wondrous. Hoping to watch a bit more tomorrow (it's too long to watch the whole thing in one evening).

Sue, will get back to you soon. With all the appointments and delays over the last seven days I'm all behind...

Labels: films, medical matters

Right - where did we get to?

Ah yes...

So I took advantage of the looong day yesterday to make a start on the Freda Warrington Blood trilogy while at the hospital. Actually got to page 361 of the 512 page A Taste of Blood Wine. I read it a very long time ago and the only thing I remember about it is the Crystal Ring, and that because I found the idea absolutely irresistible. Anyway - I'm enjoying it a lot.

Today was both Tesco and Sains shopping, then the start of my marathon cleaning of the kitchen. After dinner we watched Ghost in the Shell, which DVD I found for £1.50 in a charity shop and which haven't seen since just before Kai was born, and which we all enjoyed. My favourite kind of anime - classic, old school, thought-provoking and intelligent. There was a follow-up - Ghost in the Shell 2: Innocence - which I didn't know about and found on amazon for 9p plus £1.26 p&p, so that's now its way to us too.

After spending much of last night exhausted and lying on the sofa watching Mission to Mars and John Carter, today Kai's been feeling a lot better, and has been getting on with projects. (And I probably forgot to say but on Thursday we got another letter from Kings College Hospital with a revised appointment for mid March. I handed the matter over to Dr Lowry to sort out, though I'm perfectly happy to contact them again if need be.)

Still tired. I can't seem to catch up on my sleep. Persistently aching legs don't help, mind you...

Labels: anime, medical matters